Parkinson’s is a disease uniquely and inextricably tied to its community. Patients share symptoms, treatments, difficulties and experiences. Most importantly, they also share in the mystery of Parkinson’s disease. The causal mystery patients know they can play a crucial role in solving. Some researchers continue to delve deeper into biological factors which may cause the disease while others rely on the details patients continue to provide healthcare professionals supporting the discovery of possible environmental or other impacts. Take a look at the Michael J. Fox foundation as an example of a person living with Parkinson’s disease using their platform to impact the community. The Fox foundation can’t just raise money for treatment, they have to be involved in sponsoring research. We see the same dedication to long term change from the National Parkinson Foundation. In 2009 they launched the first data-driven study of outcomes in Parkinson’s disease: the Parkinson’s Outcomes Project. This initiative, developed in partnership with their Centers of Excellence network, introduces the concept of continuous improvement to Parkinson’s care. It is designed to change the present and the future of the disease for patients.
Both the Michael J. Fox foundation and National Parkinson Foundation emphasize the importance of the involvement of caregivers and others in the community to make the research all-encompassing and more impactful.
Those who provide direct care are called upon to serve as the critical link between patients, healthcare providers and researchers. Often times the primary caregiver is the best resource to track patients’ symptoms, medications and reactions to treatments. Their reported information is crucial to healthcare professionals providing patients with the best possible care.
At Biorasi, we see the level of caregiver knowledge and investment impact the clinical trial space from a CRO point-of-view. For example, there are a few very specific cases in which reaching out to the caregiver primarily during study recruitment is the best approach. One instance is when considering trials to treat dyskinesia, involuntary muscle movements. Because Parkinson’s patients often suffer from rigidity, dyskinesia can be an almost welcome change because they get to move around. So, they may not be as inclined to treat it. However, the jerky movements can pose a real problem for caregivers. They would be far more interested in encouraging patients to enroll in studies which may treat that particular symptom.
With the level of commitment from the Parkinson’s community, including those getting involved through awareness efforts, researchers strengthen chances of finding a cure and all the while continuing to improve patients’ lives.